INSOMNIACS place to talk in the wee hours
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Karen......
From one control freak to another control freak. Ha! The first few weeks after the dreaded phone call was horrible for me. I couldn't eat, sleep, or concentrate. All I could think of was who was going to take care of my two girls (16 and 11 at the time of my diagnose). Anxiety and worries can zap the energy out of you. It was hard to manage until I figured out that since I couldn't control my situation I needed to redirect the anxiety "energy" to something that I could control and that was cleaning the house. Let me tell you, my house was spotless! So you have a 4 year old daughter? Please do post her picture. The anxiety will get better once you have a plan. Hang in there. And you are a writer.....yay! BlueB is also a writer. She will probably come on later. I saw that you have met MTwoman. That's good. If you haven't already, do check out her post on anxiety:
https://community.breastcancer.org/forum/83/topics...
Wish I had seen it when I was first diagnosed. Please let us know when surgery will be. Finger crossed for favorable pathology report.
Btw, Shep is all mouth, but you will find that she is a sweetheart once youget to know her. Gosh, I came back and edit this. Hopefully, she doesn't see it.
You gotta watch JunieB. She is mischievous.
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BlueB, so was that a sign of affection for your neighbor who lives 3 miles away?
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Appropriate sexy big man pics? Well I was going to go with one of our classic faves, but then I came across this pic of the day my FFH (Fart Face Husband) came home from day surgery after his his vasectomy. The doc said it would improve his temperament. Geez, it's been almost 18 years; if anything, he's gotten worse............
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Oooookaaaaay. I didn't see nuthin'.
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The other day right before I got home from work DD called me on my cell phone to tell me that she smelled gas in the garage . She had to leave for work. When I arrived home there was truck from the gas company parked right in front of the house that is up for sale (2 houses down the street from ours). Perfect timing. Went up to the man and asked if he could check our garage for us. He graciously told me he would be right over. I ran back to the house and tried to figure out where the smell came from. As I was sniffing my way around the garage the smell got stronger in the one corner near the fridge. I looked down and saw the culprit.
Durian left out by DH to defrost. Tastes like heaven but smells like stinky sulfery gas! I was so embarrassed and immediately put the fruit back in the fridge. The guy from PG & E showed up with his meter walked around the garage and I was standing there feeling like an idiot. " I am not picking up anything. No traces of mercaptan." My conscience wouldn't let me lie so after awkward silence, I confessed. Showed the guy the fruit in the fridge did some explaining and we had a good laugh.
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OOOOOH Shep! That can NEVER be unseen!
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Loverly - That is funny, but how in the world can something that tastes so good smell so bad? Is the taste sweet or what?
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This is more like it. Ahhhhh!
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It tastes buttery sweet and custard like. I can't handle the smell, but do like the taste. DH and DD2 love it! In Singapore, at one time they were talking about genetically modify the fruit to take the smell out. Of course the durian lovers protested.
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So unusual. Do you have to go to a specialty store to find it?
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Oooh, I found a whole series of pics with male models and cats mimicking their poses! I like the tubby fella on the right
Where's Junie? Been waiting on her all night 😟 OMD that Jeanne Robertson is a hoot! I was laughing so hard! Pris Kitty enjoyed her also - she forced her way between me and my tablet to get the best view. She watches the screen so intently, I swear she understands what she is viewing. (only 1 kitty so not a crazy cat lady. yet)
Miss Blue ~ I read that first line you wrote and......Feline, I know you'll think the same thing! Much more pleasant to have lots of nappies than to use lots of nappies, lol! Hoping all went well with your scans. What a relief for you to finally have a GOOD MO. Such a shame he's only available to you for 2 months. Maybe he'll have someone good to recommend for you when he's gone? You must have been exhausted after such a long day while feeling so ucky. Wish I had some wise advice on your awful cough. I used to have good results with honey. One of the warnings for Xeloda is to avoid raw honey - which I prefer. There is a danger of botulism .
Loved the pic of DH in his thick rubber gloves - clever man! Pretty snuggles Kitty pic! Oh cats and their prizes.... I had one that was so stuck on himself. When he brought in one of his "kills", he'd leave it in front of HIS dish! Pris is not a killa', she's a playa'. She brings in big gross bugs because she enjoys watching me flush them down the loo. Lizards, skinks and snakes are playthings she brings in for us both to enjoy, (not!) I'm endlessly relocating reptiles to the front yard which is fenced off from her, Oh, and there was the one mouse. I don't know if she carried him in or if they came in together. I think they were friends. But that's another story. Probably one you wouldn't like. I do like mice, but not in my house. Especially my clothes closet! They haven't any indoor manners and poop and pee on stuff. We'll just say he was swiftly relocated to a "better place". Shhhh you ladies! Don't you dare "rat" me out!
Missing you Sassy!
Wenchie, Smaarty, Sensi missing you all too!
Eeyore will you be blowing back soon?
WildT are you lurking out there? Gosh it's been so long....summer is gone and the kids have long been back at school. Have you completed the Dietician studies?
Hootie Hoo to Patty!
Loverly, I'll have a special Wacky Wednesday Surprise for you tomorrow! You might have to share some of it with MammaRay 😊
Good Night to All The Owlies and Good Morning to Feline 💜
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Dang I type too slow! Now I gotta go back and see what I missed!
And just when the Sleep Fairy showed up!
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Shep give me the tubby fella on the right anytime
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Helllo MIA for days catching up from several pages.
Blue, your page on HPV vaccine is marvelous. Totally took my work to zero, IF you okay transfer to the other thread. Going to post this now before continuing to read as I am in a working mood. As soon as you say yea or nay, I can then work on your's and Feelingfeline's posts
I'm thinking they both should be put together on the science forum too.
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Hello everyone. Its been a long time for me since I've posted, hope you don't mind if I jump in with a need for advice or just understanding.
I was fired back in February and it was devestating. Lost my insurance and just struggled so much.
Now I'm back to work since June and my insurance kicked in this month. I promptly went to MO and BS Monday and they are recommending bone scan and chest CT to address some pain issues.
I really dont want to get back on this rollercoaster. I don't want to ask for time off for scans and follow up doc appts. I am giving serious consideration to holding off on scans until maybe early next year. The pain comes and goes and I've always heard mets pain gets steadily worse.
Idk I just dont want this to be my reality anymore. I'm over it and feeling sad.
Thx for listening.
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Feline (and Loverly), I can't find your post. I know I'm in a time distortion, but I have been through the last pages three times. Kept going back further each time. Finally stopped at pg 1410 which takes us back to beginning of August. Blue's post about her blog page was on Page 1425. I figured your would be with in several pages before that?????????????? Help!!!!!
I have the Pain and Other Things post done except for transferring your post.
https://community.breastcancer.org/forum/136/topics/839123?page=8#post_5062251
I'm thinking that once it's complete. I will cut and paste the whole thing to the science forum too as there is different traffic to the two threads.
CHIT I just found it pg 1425 below Blue's I have been scrolling forever at least 45 minutes. DUH!
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Loverly, just saw your post on Ding and Dong hahahahaha I transferred your post on reflux caused by drugs to the Mouth thread. Thanks great info.
https://community.breastcancer.org/forum/6/topics/834699?page=1#post_5062328
Blue, There is only one sphincter at the Esophageal Gastric Junction (GEJ). Once stomach contents gets by the GEJ, how the esophagus and throat are impacted depends how far up the esophagus the contents are propelled.
But I'm rereading your post. " The cough and irritation mainly lies in the cancer lymph node that was at the base of my thyroid. I had that going on 8 months before "discovered". and your thought that Xeloda finished it off. But then the cough returned.
Okay new thought. Your description of a node around/ near the thyroid put the light on. The recurrent laryngeal nerve (RLN) runs in that area. It's direct route goes to the Larynx. I threw "Recurrent Laryngeal Nerve and Cough" into the search engine. There are many citations.
I like this citation because. It identifies a cough syndrome with an explanation of when it should be considered after everything else is ruled out.
Even better this doc defines a well planned treatment with directions. Very Low dose Amitriptylline. He describes that response can be expected in three days. With directions of how to modify the plan
What I like about his approach is it's a step by step plan based on patient response.
Amitriptyline is a very old drug (1970's). Generally, very well tolerated. It's use is for depression. But the drug in this case is NOT used for depression, but for the effect on the cough reflex stimulated by the Recurrent Laryngeal Nerve (or branch). He doesn't mention the anatomy, but that's what's happening.
This work is by James P. Thomas, MD
https://www.voicedoctor.net/therapy/cough-and-larynx
I would run this article by your doc asap.
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Loveroflife Thank you! I really appreciate the positive feedback. Later this week I will definitely share photos. I have to get back to work tomorrow and today is filling out FMLA stuff...I'm not really sure how smoothly that will go for me. Blah! Here is hoping. I'm sure I will love this particular thread in the upcoming weeks.
I love Chris Hemsworth! I just watched the new Ghostbusters again...he is so good looking....not a smart character, but shares a name with my fiance in the movie. I think there is a Kevin in every show and movie ever made. lol!
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Shep, your thread is very good.
Loverly, Hmmm, 15 lb weight loss, headache, what kind of work up has been done?
Karen hello, Try this thread. It has explanations in the topic box as to how to use it. Toradol is discussed. It has to be used just prior to incision during surgery, please, read soon to consider if it's something you want to pursue with your doc
https://community.breastcancer.org/forum/73/topics/843381?page=1#idx_22
Paws it's been forever, How are you doing. My son Steve got married since we last chatted. I'm falling apart in otherways, but no more cancer right now.
Mommie hope you feel better. Do you need a nose mitten?
Blue, so sorry it's tough. I wish you were as well as your indomitable spirit. Shep's response " Much more pleasant to have lots of nappies than to use lots of nappies, lol!". I agree
Teka, Thanks for the update on Lita. Hope she does well. Yours was the first post I saw this morning, but I was working from back to front. Now just getting to you hours latter. Hope you are doing well.
Tang, it depends on the pain and or dysfunction. I agree with Teka. But something new should be evaluated if it lasts 2-3 weeks unassociated with predictable trouble makers i.e fever. Toss out the symptoms either here for group evaluation or in a PM
Hi Kathie, Junie, Eeyore, WT, Pattie, Mamma Ray. Tapper, Celia, Cling, Sorry if I missed anyone
In trying to find that post today, I noted that the last time Wenchie posted was August 7th. She said she was going to be off for while, but..........
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That's very interesting. It's a pretty small dose of amitriptyline, way below what is given for depression. Wouldn't it be a Godsend if it works?
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Hi Wren, Wouldn't it be great. So love the computer. It finds the best stuff. This treatment is analogous to a similar treatment of low dose Thorazine being used for intractable hiccups. The first time I was given that order, my face gave me away, it was like "What?". Then later I suggested it to a doc for a patient, and his face was like "What?". I so enjoyed this docs approach. He covered the whole spectrum definition, treatment plan, plan revision, and weaning. keeping easy and simple.
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Ah, there she is. Who lost 15lbs? Not I. With all the stress recently, I had lost about 10 lbs .....but slowly gaining a few pounds back. Have I told you I love to eat? Just can't enjoy food when I am overwhelmed. Headache is probably stress related too. No critters growing up there based on MRI a few months ago. Right now I need someone to burp me as I can feel the gas trapped in by back. With the other end you can do squat, but how do you get rid of gas pushing up on your lungs?
Tang, I can understand why you are scared to take time off. Tough predicament to be in. Just not fair. It is not hard not to worry with any aches and pain. Hugs
JunieB, durian can be found in some Asian supermarkets. Why you want to try some? Ha!
Ms. Sas, you forgot Sensi, Peppy, and Ms. Smaarty....my posse. And Queenie who is busy studying computer and one day will take over Bill Gate's business.
BlueB, somehow I overlooked your post re: prednisone allergy. Supposedly rare. Is it confirmed by skin test? Do you use any inhalers? Have you tried baclofen? No randomized controlled trials but if it helps you....
"As hypersensitivity to stimuli (reflux) is thought to contribute to chronic cough, neuromodulating agents (e.g. amitriptyline, gabapentin, baclofen) have been investigated as treatment agents. Canning et al. recently evaluated the effect of lesogaberan, a GABAb receptor agonist, in guinea pigs with citric acid induced cough.22 They reported that both lesogaberan and baclofen reduced coughing in a dose dependant fashion, but lesogaberan did not affect the respiratory rate. In humans, Xu et al. recently reported a small case series of 3 patients with chronic cough who responded to baclofen.23 However, the data to date supporting neuromodulator agents for chronic cough was systematically analyzed with data from 8 studies (2 randomized controlled trials) that had significant methodological limitations. The studies did report varying levels of response, but the current evidence is mainly hypothesis generating and should be used to design more rigorous trials with strict patient inclusion criteria.
If baclofen is used off label for refractory cough symptoms we would recommend starting at the lowest possible dose (5mg) daily then increasing to three times daily over 3 days. If no response is seen, another increase over 3 days up to 10mg TID is reasonable. We would then recommend assessing the patient via telephone or in person at this time (after 1 week) for response to treatment. Similarly, if gabapentin is prescribed we would also recommend starting at the lowest available dose and assessing response in a timely manner (within 1–2 weeks)."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4120957/
Or Tessalon Perles (benzonatate)....which numbs the stretch sensors in the lungs. Baclofen possibly works centrally and benzonatate locally. You attack the cough at two different angles.
Fingers crossed that either Amitriptylline or these two rxs will work for you.
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Sas - THANK YOU sweet lady. I am so on this. Will be reading every detail this evening on my iPad. Will get back to you. This could well be it. Will call my DNP for the rx.
It used to be the only cough was a bronchospasm when I laughed, I would cough, DD has it too. And when I was around chemicals or in the scented aisle I could feel closed off. But then the cancer node started growing and this cough has not stopped since. I cough about 40x an hour, no kidding. There is a connection to typing and writing too, arm movement, the link to my neck / throat and right to the vocal chords.
This is awesome. I will be back to this.
Also am researching all my labs / scans and net for the reason Xeloda did not get the liver cancer but all else, or was it the Xeloda that did the work? Am posting that on 3 forums to ask for help / insight.
I have a few pages to read - you had a party! I was too tired for two days to even com on computer except in middle of the night while drinking hot water for cough. But wasn't in a good enough mood to visit here. grin.
OH SAS yoohoo - and YES to permission to link that blog page which I will update someday and to wherever you want. Any page. I have to clean up my blog and carry on, it is an energizer for me. I feel like that cute pink sexy bunny guy w the bass drum!
Bathroom again - 40 mg lasix for awhile. whoooossh
Hi to all. Back soon.
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Hi again. Good news. I have cross referenced for lupus and drug-induced lupus. Amitriptyline is used for lupus. It is a good choice. I am running to my DNP to request an rx . You know pulmonologist #2 prescribed chlorpromazine for this trick but that drug is known to excite or induce lupus which is why I fired him.
OK going to read pages now. Oh and thank you loveroflife for sending info too.
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Hahaha Loverly, I may have gotten the poundage wrong, but glad you had the MRI. Love MRI. I'm with Shep. Brain MRI @ BC dx and periodically over several years i.e. 1, then 2> then.........Hey, I am a case example. Meningioma dx'd same day as BC. Serial MRI's. Bugger started to grow two and half years later. Still benign at excision @ 3years. I pretty well lied about symptoms or lets say amplified symptoms. I knew what to say to get the MRI done initially, but I also had an inkling that whole prior year. There's more to it than it was inkling, very unusual series of events..... I didn't like hearing you had a weight loss without intention. I dislike those words cuz they always mean somethings up.
Do you think we should put all the cough differentials together in a post?
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Bluebird, so hoping it's the magic bullet...........................But there is another lesson, I already forgot about the Lupus. You are proactive about your Lupus, the lesson is "how does it (anything) fit with underlying conditions and then the extension of that other drugs that the patient is on. I.E. worried about these unproven herbals, but you are aware they can do harm. But many approved drugs do harm. Hate to admit it it's all a.............risk.
That dx of cough syndrome that the doc talked about does fit your scenario. Never heard of it, but the right search terms into duckduck go finds stuff.
How long on Lasix and why?
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As a BTW thingy, I use duckduckgo.com as my search engine. Google sells are info. ddg.com doesn't. Plus, google is now notorious for censoring the net here and worldwide. Google owns YouTube. In the European Union, Google signed an agreement in 2016 along with Fb, twitter, snap(whatever) to filter news and speech and even report to the government. Not good. Google here has been shown to censor responses by algorithm, since almost it's inception (around 2000).
Not sure how ddg.com supports itself b/c it doesn't do adds and doesn't sell info, but I chose to make it my search engine a few months ago.
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Yes! Sassy put the cough lnfo all together - need to pass that info to my Dearest MIL. She has been suffering for years.
Thank you for the kind words about my The Pink is a Liar thread. I tried to channel all that you have taught me into the topic box ☺
And what did I tell you about your ducking search engine? Tsk, tsk..... it is open source! Anyone can go into the programming and do what they want. Google at least has some safeguards. Queenie - opinion?
bbl 🙃
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We forgot Forward!!! How could we forget about Forward? I miss Jazzy and WildT, but I know people need to move on.
Ms. Sas, sounds good re: cough differentials. You do the work and I supervise? Ha! Brain cells depletion secondary to sleep deprivation. Only had roughly 3 hours of sleep last night. Couldn't get comfortable. Clock was at 1 something a.m.last I looked before I dozed off. Closed my eyes for what seemed like 5 minutes then it was 4:45 a.m. which was time I needed to get to get up to take DD2 to swim practice. Too many tension knots on my shoulders and neck. I think I need to borrow Junie's masseuse.
After 3 weeks of waiting and me bugging them every few days, I finally got a call from Dad's PCP office today to let us know that a referral for another urologist was sent and to expect a call from them soon. The lady who took care of all the referrals was out sick for nearly 2 weeks and their other assistant left. Dad has an appointment tomorrow with a different urologist from the same practice he visited last month. I am tempted to cancel the appointment.
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Yes, LoverofLife - it was affection and the vote of confidence in knowing they will not kill them either, neither Chris at the one retreat nor Renee at the farm would kill them. They will love them like I did. though I had to let them go, little meeses.
LoverOL I do have inhalers. The allergy is new. I didn't have it last summer when allergy dr gave me rx and inhalers and tests for allergies. But I think I am on system overload w the radiation, chemo drug, recent hormone therapy too. And w lupus, things go awry too often to follow, then it changes to something else. Lupus says, let us ponder what to tear into next.
I tried the perls - they did not work. The chronic cough originates in the throat so I suppose that is why. I will take to my DNP the baclofen info too. It may be what she would prefer to rx but I think the other may be best for me. Thank you for checking into this too.
Welcome KarenWriter - I share my stories on here. I have to clean up my blog one day since there are many links to stuff that is not even available anyway and it is not really good etiquette. I would copy paste the stories but I have an app on blog so copying is not possible for anyone. And I am too feeble minded right now to figure how to log in anymore. It's around here somewhere, username and password. When I first found the mass I forgot it was found, literally, memory issues back then, found it a few more times then one July afternoon found it in shower and got out and wrote a note to self LOL and told Hubby that night after he got home from work. So from April to September I did nothing except learn and think. Then I went to my nurse, she came in the room kinda bellowing - when one finds a breast mass one comes to the doctor for intervention. eeeee I love her. As far as nerves - I spent the next two MONTHS gathering info and thinking what to do, researching and thinking some more. I did see a surgeon right after my nurse sent me for a mammo. And one day after two months he called me and said you know, I never call anyone but you have been on my mind and if you are not doing something then I have to say you really need to do something. I just couldn't stop thinking this so I felt I had to call. I didn't use him as a surgeon, he was general, I wanted a BC specialist surgeon. And still fell into the wrong choice as he was also general, didn't realize. But I finally did something. Some move quickly, some too quickly, some slowly, some too slowly. Pace yourself, make wise decision based on the input of those who have been there and know more. That's what I learned from BCO. We are a huge team. And this site is the BC encyclopedia only in reality style.
Sas - the lasix was upped from 20 mg which I took every few days now to 40 everyday until the inflammation clears. So much fluid in my stomach and upper legs, like a huge balloon to carry around. It has already helped. Also am nibbling 2 mg off the prednisone tablet each night to gt a little help for lungs. Right now I am off all supplements and rxs except Xeloda, lasix and Claritin. Need this resolved then can add slowly to what I need.
2 in morning - oh no - I didn't realize, have not been to bed yet. Reading and researching.
Later all.
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